new type of muscle spasms

[justy]

Hi, i want to talk about muscle spasms. Ive had various different types during this illness. At one point i had severe cramps in the legs, feet and hands - that cleared up after a few weeks of magnesium and has never come back. Then there was RLS - that unbearable crawling urge it move the foot or leg over and over - especially at night and when tired, it spread to my abdomen so i had it in my body too. That also went away after a longer period on magnesium.

Next came strong jerking flying out of the limbs - usuall after exertion. A leg would jump half a foot in the air, followed by an arm flinging out sidways and i would twitch and jump like this for a few minutes - sometimes ten, maybe 5 times a day at its worse. When it got really bad my head would snap round and my shoulders twist and my arm and leg on opposite sides would fling out - sometimes it felt painful. Now i am improving this has nearly gone completely too.

Now on to the newest one, which i would like to hear any views, stories etc about. It happens at night, when in bed. My foot and leg below the knee go into a tight spasm - its not cramp and doesnt hurt like cramp, its like a spastic kind of thing with the toes going rigid and seperating,a dnt eh calf muscle pulling tight. It hold for maybe 10 seconds and then goes. This will recur usually for 10 minutes at the most. Last night it went on for hours - at least 4 before i could fall asleep. At one point it felt like all my muscles in my body, including my mouth and chest where sort of very slightly rippling or tensing. I noticed that i could almost make it stop through very very intense mediation and breathing - or at least i finally fell asleep like that, although it didnt feel voluntary i felt like i could have some small degree of control over it.

Today my muscles are a little jumpy. I felt very wired last night and couldnt sleep - then woke up after only 3 hours sleep with a racing mind and terrified that it would start again. Usually these days my sleep is better - but my 9 year old is having problems with insomnia and destroying everyones elses sleep - thats a whole other story - but her insomnia seems to be giving me insomnia because i feel so on edge about wether we will all get any sleep or not.

Thanks for taking the time to read this post,
All the best, Justy.

 

[adreno]

Potassium?

 

[merylg]

Hi justy,
Sounds awful. Sorry to hear you are experiencing this. Are there any prescribed medications that might be causing this?
Not sure if you are trying B2 (Riboflavin), but I am finding it is helping (along with magnesium malate) relax all the muscles in my body as I sleep at night. Apparently adding CoQ10 (I find the form ubiquinol better than ubiquinone) can help too.

Here is some info might help: http://en.wikipedia.org/wiki/Myoclonus

Lots of things can lower seizure thresholds too. Even getting older

 

[nanonug]

Electrolyte disturbances come to mind. Also iron deficiency (implicated in RLS). Akathisia could also be a possibility.

Have you ever been diagnosed with ADHD/hyperactivity?

Are you on a methylation protocol?

 

[justy]

Definately not akathisia. Am not on a methylation protocol but do inject 300mcg B12 perday.
Definately not a hyperactivity thing - its in my muscles - i don t feel restless in any way.

Hi Meryl - the only drugs i take are inhalors for my lungs- dont think its those. I have got my B2, but am actually going to have a few days with no supplements to see what is what. My tolerance for supplements seems to have grown, but i do sometimes have problems with Co Q10 making me feel jittery - althouhg i have been taking 100mg a day now without that side effect (my doc said shed never heard of anyone having that problem with coq10 before - typical huh?)
Thanks for the replies - i might try a banana next time - see what happens.
Justy.

 

[justy]

I just had a read up on Myoclonus - sounds very much like the muscle jerking i had before with an arm or leg or shoulder twisting and jerking briefly for a few minutes at a time. What i am experiencing now looks more like dystonia. Do others here have this?

 

[Calathea]

I'm a bit too tired to do proper research today, but have you considered Restless Leg Syndrome?

Minerals are often worth playing with for this sort of thing. One possibility is an electrolyte drink, either bought or home-made (look up home made Gookinaid for recipes for the latter). You can also get multi-mineral supplements which get good reviews for this sort of thing. One thing I'd be wary of is potassium supplementation. You need to make sure it's carefully balanced with sodium and so forth, and you should also be aware that the amount of potassium sold in tablet form (99mg) is about 2.8% of the RDA and unlikely to make a blind bit of difference.

If you're wired, having trouble sleeping and generally a bit stressed, have you considered something like valium for a few days? It's a muscle relaxant, which may help with the leg problem, and obviously works for anxiety and sleeplessness and so forth. It's not something you want to be using much of due to the addictive potential, but for short-term use it's a really handy med. This depends on having a doctor who is willing to prescribe it, of course, and will neither freak out at the idea or pretend that there are no potential problems with addiction. Sensible doctors should be able to cope.

 

[nanonug]

the only drugs i take are inhalors for my lungs- dont think its those.

You mean, things such as albuterol? These are known to lower potassium. I would very much consider these drugs as possible culprits.

In any case, I would suggest you consider the methylation protocol. Mitochondrial dysfunction in the muscles could also be a problem due to undermethylation/depleted glutathione. Shortness of breath could also be related to undermethylation/depleted glutathione as explained by richvank in the methylation forum.

 

[justy]

Thanks for all your interest and replies. The drugs i use for my asthma and fibrotic lung are budesonide and fomoterol fumerate - not sure if these lower pottasium or not and im also not clear if just the methyl b12 injections without any of the other methy protocol supps is able to cause an increased need for potassium.

Calathea - it isnt restless leg syndrom either i'm afraid - i did suffer form that for a long time when i was fiorst ill and managed to cure it with magnesium and mineral supplements. I agree re the valium, i do get it rpoescribed by my GP as i used to suffer terrible anxiety and would take a low dose for certain occasions such as long journeys or the kids long christmas dance show. I nearly took one last night, i always try not too- i onlt take one every couple of months or so. If it happens again tonight i may have too.
The other thing i did notice last night as well was that the choking on my saliva thing kept happening too and woke me up twice when i had just nodded off - so annoying
Hope you are all ok,
Justy.

 

[hurtingallthetimet]

hope you are feeling better...ouch the cramps hurt so bad...ive been dianosed with rls...it has helped me to eat banannas for the potassuim like someoen else mentioned...hot bath before bed sometimes helps..with epsom salts...or muschle rubs..

ive been having what feels like little bubbles popping in my lower legs not sure if its from the illness or rls or what..its weird...

if your choking on your salvia you should call your doctor or see them that sounds like it could be dangerous to happen at all but espically while sleeping...i hope you figure out whats wrong and that you feel better

 

[nanonug]

The drugs i use for my asthma and fibrotic lung are budesonide and fomoterol fumerate - not sure if these lower pottasium or not

Both are known to produce hypokalemia in some people (read side effects for both).

im also not clear if just the methyl b12 injections without any of the other methy protocol supps is able to cause an increased need for potassium.

Methylcobalamin might also in theory increase the body's need for potassium.

Given your symptoms, I think it would be prudent to ask your doctor for extended release potassium capsules.

 

[merylg]

Hi justy,

The trembling and muscle cramps sound like severe side effects of Formoterol.

Not sure re injected Methyl B12. I know that sub-lingual Methyl B12 made me feel VERY ill, especially on waking every morning.

I had potassium measured a couple of times and my levels were OK. So in my case I think something else was the issue. I now think it was B2 (Riboflavin) deficiency/depleted stores, and/or an intolerance of Methyl B12.

I tolerate sub-lingual Hydroxy B12 & Adenosyl B12 (Dibencozide).

 

[justy]

Thanks for the replies, i will consider the potassium issue again next time i see my doc. I have been on these meds for years and years with no problems - i feel it could be more neurological in origin as i have a lot of other neurological symptoms. I dont have a problem with the mb12 - been taking it for about 6 months, but i did need to increase slowly - even now i'm on only half the prescribed dose.
I've decided to have a few days off from all supplements - sometimes my instinct tells me i need this, i don't know why but it sometimes helps to settle things. Anyway - slept like a baby last night and no spasms.
I've been looking round the internet and it sounds exactly like this

http://www.wemove.org/pdys/pdys.html

Paroxysmal dyskenesia - which would include the earlier strange flinging, jumping and jerking movements as well as this new type. It's considered paroxysmal when it happens occasionally, without a particular trigger (although stress, sugar and fatigue can and do make it worse)
They also talk about the strange foreboding and crawling type feeling that comes before an episode and immediately before each spasm - i get this too (i think this is similar to RLS in some ways) At least the jerking and flinging has stopped - it was getting embarrasing as it would happen not just at night but at other times when talking to people etc. This condition is rare, but more common in genetic disorders, MS, Lupus and AIDS patients - surprise surprise! just like evry other symptom i ever have.
Take care everyone, Justy.

 

[taniaaust1]

Hi, i want to talk about muscle spasms. Ive had various different types during this illness. At one point i had severe cramps in the legs, feet and hands - that cleared up after a few weeks of magnesium and has never come back. Then there was RLS - that unbearable crawling urge it move the foot or leg over and over - especially at night and when tired, it spread to my abdomen so i had it in my body too. That also went away after a longer period on magnesium.

Next came strong jerking flying out of the limbs - usuall after exertion. A leg would jump half a foot in the air, followed by an arm flinging out sidways and i would twitch and jump like this for a few minutes - sometimes ten, maybe 5 times a day at its worse. When it got really bad my head would snap round and my shoulders twist and my arm and leg on opposite sides would fling out - sometimes it felt painful. Now i am improving this has nearly gone completely too.

Now on to the newest one, which i would like to hear any views, stories etc about. It happens at night, when in bed. My foot and leg below the knee go into a tight spasm - its not cramp and doesnt hurt like cramp, its like a spastic kind of thing with the toes going rigid and seperating,a dnt eh calf muscle pulling tight. It hold for maybe 10 seconds and then goes. This will recur usually for 10 minutes at the most. Last night it went on for hours - at least 4 before i could fall asleep. At one point it felt like all my muscles in my body, including my mouth and chest where sort of very slightly rippling or tensing. I noticed that i could almost make it stop through very very intense mediation and breathing - or at least i finally fell asleep like that, although it didnt feel voluntary i felt like i could have some small degree of control over it.

All the best, Justy.

Hi Justy .. Im amazed how well you described what I had going back several years or so ago with the ME. I had all you described here except the choking feel, my toes still do the spastic kind of thing at times (and my hands go at times into spastic postures too) but I dont get any of the other stuff there now.

At one point it felt like all my muscles in my body, including my mouth and chest where sort of very slightly rippling or tensing. I noticed that i could almost make it stop through very very intense mediation and breathing - or at least i finally fell asleep like that, although it didnt feel voluntary i felt like i could have some small degree of control over it.

That is what I got diagnosed with "rhythmic myoclonus" which can affect my whole body.. . if i focused extremely hard sometimes I could stop it. thou it used to happen spontanously. Other times it would just happen in a section of my body. My body would do that for minutes. or sometimes for hours (one time it did it for 3 days straight.. constant rhythmic myoclonus which didnt stop until I had complete over night rest when I got put into hospital for the neuro symptoms). Muscles in a constant on off spasm.


The progression you mentioned of your issues is the same too as mine.. RSL before I got all that other stuff including the strong jerking and flying out of the limbs. Once that even threw me off of the lounge.... another time I was sitting on the floor crossed legged and was thrown by it face first into the floor. It just happened spontanously many times a day... it thou got to the stage were I was getting the jerking several times a minute.

I had the head thrown to side thing too.... that could thou not only happen spontanously but also with stimuli..it wind hitting my face could make my head be thrown quite violently to one side in a neuro reaction....over and over again quite rapidly to one side (in my case my head used to be thrown to the left).

In my case.. it got to the point where I also spontanously vocalised a loud sound at the same time as the jerk happened (like all the wind being pushed out my body when it happened)... this whole thing was very embarrassing if I was out at the time.

.. After a while I was not just getting the jerking but I also started having constant tremors... to the point that nurses at the hospital mistook me for a parkinsons disease patient. I went weeks in constant severe tremors.


Fortunately the neuro symptoms in my case have settled (the severe neuro symptoms doesnt seem to have left me with any permanent damage) and i dont get the tremors and jerking anymore, the symptom complex shifted yet again to the point where Im now more POTSY which mades it hard for me to do enough to get the ME to flare up. (note..i wasnt on any meds when I had all the jerking..which ended up with also constant tremors involved, so it wasnt med related).

Around the time I had all the neuro symptoms.. I also was very postive to the Rombergs test (instant fall down), had hyperreflexia when tested at knees and also had abnormal foot reflexes (Babinski's reflex) which was an off and off thing (unfortunately the day the hospital did that test I didnt have it..but I had previously at times and had it the day I got out of hospital, if my foot was stroked) http://www.nlm.nih.gov/medlineplus/ency/article/003294.htm

"The presence of a Babinski's reflex after age 2 is a sign of damage to the nerve paths connecting the spinal cord and the brain (the corticospinal tract). This tract runs down both sides of the spinal cord. A Babinski's reflex can occur on one side or on both sides of the body.

An abnormal Babinski's reflex can be temporary or permanent.
"

Hospital neurologists (they got their head one in to look at me after the first one who checked me out was quite confused) on seeing I already had a CFS/ME diagnoses, seemed to want to get me out of hospital ASAP as the group of abnormalities which my body was showing didnt fit any disease they knew (they said that).

 

[alex3619]

I can't speak for some of your symptoms justy, I only get rare arm or foot jerks, though when almost full asleep I do occasionally get a myoclonus full body jump.

The foot tapping thing I used to get a lot. I associate it with essential fatty acid deficiency. Try some fish oil, and if that doesn't work try a tiny dose of evening primrose oil.

During sleep one calf muscle can cramp so hard its a ball - fully round. It sticks out in a big lump. It doesn't like to release, and wont without stretching - which tears the muscle so that I limp for days. This is similar to your night cramp-like issue, but it might not be the same. Magnesium and calcium both help with that.

Bye, Alex

PS Based on some old research in South Austalia, half of us are potassium deficient on whole body measurement, even though our blood tests are normal.

 

[justy]

Thanks Taniaaust1 and Alex for your replies. Taniaaust - your symptoms sound very similar to mine - alythough maybe more extreme. I read on the link i posted above that damage to the basal root ganglia can cause paroxysmal dyskenesia which i thought was very interesting given Sophia Mirza's autopsy

A neuropathologist testified at the inquest that four out of five of Mirza's dorsal root ganglia showed abnormalities and evidence of dorsal root ganglionitis, inflammation of the dorsal root ganglion.[6] A neurologist who consulted on the inquest stated the changes in the spinal cord may have been the cause of the symptoms Mirza experienced as part of her CFS

Lyn Gilderdales autopsy also showed Dorsal root ganglionitis

 

[Mog]

When I wake in the morning, when I'm still half-asleep, half-awake, I notice that the middle finger of my left hand is twitching. It does so until I consciously make it stop. The only other time I get it is,conversely, not when I'm relaxed but when I'm tense. If I'm in company and tensed up, I find that I'm holding my left hand in my other hand, to stop the finger twitching. I've had this for about a year and not mentioned it to my doctor.
(Like Alex said, I also get the full body jump when I'm falling asleep but had never worried about it.)
Should I be concerned and get the finger twitch investigated (if the doctor will do anything, which I'm not sure he will) or is this just another symptom of M.E.? Would appreciate any advice, thanks.

 

[Mithriel]

Paroxysmal Dyskinesia is found in some people with ME. I have it quite badly but it is controlled a bit by baclofen. I also found gabapentin, prescribed for pain, has reduced some of the movements. At one point I could barely feed myself.

I became friendly with a women with MS who also had it (it is rare in MS as well). She was told by her neurologist that it is usually seen as a genetic disease and some researchers think that only people with a genetic tendency get it with another neurological disease.

Yet ME and MS do have damage to the brain and nervous system so it could just be bad luck that it is that part of the brain which is affected.

Neurologists don't take twitches very seriously. Unfortunately, movement disorders are seen as a sign of hysteria so not a lot of hope for anyone who already has a diagnosis of CFS.

Dystonia and muscle spasm is found in ME quite a lot, again because it is basically neurological NOT primarily fatigue.

The finger twitching could be a faulty nerve signal or swelling of the finger or wrist causing pressure on the nerve. Very annoying and the constant movement will tire the muscles.

Before CFS, they spoke about muscle fibres going into a lump instead of aligning in one direction, heat can increase the blood flow and straighten the fibres. We are very sensitive to the cold so that might be making your legs worse.

Hope something helps,

Mithriel

 

[Mog]

Thanks Mithriel. You obviously have it much worse than me. It's not a problem for me as such, but am just concerned what it might portend. I thought a neurologist might be interested but you suggest not. I do know someone with ME who had it fairly badly, in my opinion, quite severe head and upper body sudden movements. I believe she was getting referred to a neurologist but I don't know what came of it.
I thought mine might be to do with magnesium deficiency, because mine started after I had stopped taking magnesium for a couple of months. However, it hasn't gone away since I restarted the magnesium unfortunately.

 

[JT1024]

I've been experiencing severe muscle cramping over the last few weeks - more so than usual.

It's been scary because it seems to be throughout my body - not isolated to a calf or foot. I've been taking magnesium malate for quite a while and that isn't really helping right enough right now. I do have potassium because at one point I realized I was potassium deficient. I don't take it all the time.

My hands, feet, shoulders, arms, legs, and muscle groups in my torso have been not behaving well at all. As a result, I've not been sleeping well.

I'm off to take my potassium and hope to get better sleep tonight.